Tuesday, December 23, 2008

Good Lord what next??

*sighs*... so I went to the neurologist again today. As I already knew, my spinal tap was positive for Multiple Sclerosis. They are starting me on Copaxone, a nurse is coming to the house to teach me how to give myself the injections next week. I can deal with this...I was expecting this, and am actually relieved to finally be starting treatment.

But then she started asking me all these questions- questions that have nothing to do with MS. About any joint pain, rashes, family medical history, etc. I answered yes to the majority of them, getting more and more nervous about where this conversation was going with every passing second.

Finally, she goes "well.. I have to send you to a rheumatologist. You not only showed the protein for MS in your spinal fluid, you tested positive for Lupus as well".

Excuse me??? And yes, that was my response to her. Lupus? You have GOT to be kidding me. She went on to tell me how the original blood work in the hospital showed some ANA thing in my blood, which is positive for Lupus. (new news to me, hence why I changed neurologists) So as a precaution, she ordered my spinal fluid tested for it as well. Low and behold...it came back positive. She said sometimes one disease can mimic the other- and that is a possibility. But what concerns her is the fact both the blood work and spinal fluid came back positive, and the symptoms I have had over the last couple years that are more of Lupus than of MS. Because with the original MS diagnosis- I still had some odd symptoms that didn't fit. Her concern is now that I actually developed Lupus right around the time I had my son, and developed MS afterward.

So I came home, and of course researched Lupus like crazy. And... I just cringed the more I read. Way too many symptoms that aren't MS at all- but are definitely Lupus. My stomach turned as I read how MS is one of the diseases people with Lupus are prone to developing as well.

Here is Wiki's definition of Lupus:

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that can be fatal; however, with recent medical advances, fatalities are becoming increasingly rare. As with other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system."

...and I found this:

"Can a lupus patient get another autoimmune disease?

Yes, & it is quite common. Antibodies can develop against a variety of organs, tissues or glands, resulting in many different diseases. Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis."

So...yeah. This is not looking promising at all. Even my dad, who is very honest and who's opinion I value greatly especially on medical issues, said he thinks from the tests and symptoms I likely have both Lupus and Multiple Sclerosis.

I can handle having MS, I really can. I've accepted this. But Lupus too? I have to wonder who's Wheaties I pissed in for God allow me to have both. I think what scares me most is said quite plainly in the first line of it's definition: "It can be fatal". So I think to myself, my God, if it can be fatal all on it's on, what if you have MS with it too????

I am....struggling. Really really struggling. I am more afraid now than ever.

I'll write more another time soon... when I have had some time to wrap my brain around this.


1 comment:

  1. This is 2010 and I hope you are doing better. I have been wondering why I am always surrounded by chaotic situations. Today I realized that God was preparing me for something that I would better be able to relate to because of the chaotic situations. So, He is preparing you for something great, even admist this storm in your life.

    Never Give Up...